About me

PROFILE:

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, February 26, 2016

“Rare Disease Day”
was conceived nine years ago and is marked on the last day of February every
year by the international rare disease community. This year, being a leap year,
29th February is a day when we hope to raise awareness and bring to the
forefront many rare diseases, that due to their very nature and small numbers
of patients, are not often heard of.

A picture is worth a
thousand words, so they say, especially in today’s high tech world, no one has
the time or patience to read, and attention spans are short. This is where
cartoons can effectively get a message across, imparting information,
expressing opinions and making a statement. It was with this in mind that a friend, who has been a Cartoonist for over forty years, kindly offered to
donate a cartoon especially for Rare Disease Day. I
would like to thank my friend, Yaakov Kirschen for his donation, courtesy: “The
Dry Bones Academy” which can be re-posted and used by anyone to promote Rare
Disease Day.If you would like to read my article about Rare
Disease Day, please take a look at The Huffington Post.

Friday, February 19, 2016

I was recently
hospitalised – a familiar occurrence in this household. I’m sure you would agree, that hospital pyjamas are not
exactly renowned for their sense of high fashion or style, not to mention their
“one size fits all” policy! I think it’s fair to say that patients come in all
shapes and sizes. Arriving in the ward, a nurse brought me pyjamas, telling me
they only had three sizes; large, large, or Extra Large! It sounded like the
beginning of a Monty Python sketch and I tried to hide my smile. I settled on
large, but I need not have worried, for the size was immaterial when I found
only three of the metal poppers actually worked. The broken ones remained merely
as decoration, unfastened leaving the front of these pyjamas revealingly open. A
younger woman might have carried off this racy look, but I’m 52 and look a
little worse for wear, so I seriously doubt this was a good look for me. The
hour was late, after having spent a considerable time in the ER and I was
exhausted from all the evening’s excitement, and just wanted to go to sleep.

Once settled in the
ward, the doctor on call that night, paid me a visit. She wanted to hear
first-hand exactly why I had been brought in, and so I explained (what felt
like the hundredth time that night) the worrying symptoms that had begun a few
hours ago. The doctor asked me “Apart from these symptoms, do you have any
preceding health issues?” I smiled, thinking to myself, here we go again – I
hope you’re ready for this! I launched into my story of being born with Gaucher
disease, a rare genetic disorder and at the age of 44 being diagnosed with
Young Onset Parkinson’s disease. The doctor had a hard time keeping up with me
as she wrote quickly in her notes. Finishing my late night performance, I
wearily leaned back on the pillow. The doctor with pen poised then asked “Do
you have any other health issues?” I couldn’t refrain from laughing at this
question, and never short of a retort, said “I think that’s quite enough, don’t
you?” Seeing the humour, the doctor nodded and readily agreed that I had more
than enough!

Friday, February 12, 2016

Having difficulty in
typing, family and friends have been helping me out. So it may not be my fingers
on the keys now days, but these are still my thoughts, my words and my personal
experience that I’m sharing with you. If the reality of what I’m living with is
too hard for you to digest, I don’t blame you for not reading on. Why am I
writing in such a brutally honest manner? It certainly isn’t to upset or
frighten any fellow sufferer. My hope is to reach the powers that be, those in
R&D or running clinical trials, scientists, doctors and medical students. I
want there to be a greater understanding of what it really means to suffer with
Parkinson’s disease.

As if living with
Gaucher and Parkinson’s disease isn’t enough excitement for this household,
throw into the mix a slipped disk and you may have a recipe for disaster. A
golden rule regarding a slipped disk, is bed-rest. A slipped disk usually entails
not being able to stand, walk or even sit, the only remaining option is lying
down in bed. After a lot of painful slow squirming, finding a position that is
relatively pain free, with pillows strategically positioned, anyone in their
right mind would be extremely reluctant to move. However having Parkinson’s,
remaining still in bed proves to be a tall order.

So here lies the
problem; Gaucher disease, making joints and bones painful, a slipped disk that
requires bed-rest and little or no movement, and lastly but by no means least,
Parkinson’s, with a myriad of symptoms that exacerbate and delay the recovery
of a slipped disk. To allow my back to heal, lying in bed several days, being
immobile is like giving Parkinson’s the green light to go ahead, which is all
it needs to drag anyone it can, down a slippery path at an alarming speed.

The human body is
like a finely tuned machine and nothing short of miraculous in design, so long
as one remains healthy. Unfortunately, when serious health issues arise, the
delicate balance is upset, which can begin a chain reaction of sorts, sending everything
out of whack.This is where the
human spirit, strength of character, determination or sheer stubbornness,
whatever you may wish to call it, is put to the test, for I believe this is
what keeps me from giving up and shutting down.

Some years ago, my
voice was recorded with the purpose of being used for a mannequin attached to an
ultrasound simulator teaching aid. I had to read several prepared sentences, one of which seems highly inappropriate regarding my situation today. So
should you ever be in a medical training facility and hear a woman’s voice with
a strong British accent coming out of an ultrasound simulator saying: “system
shutting down”, yes, that’ll be me!

Friday, February 5, 2016

There are many
symptoms that a Parkinson’s patient puts up with, many of which have no
solution. When I come across something that may improve my quality of life by alleviatinga littlediscomfort, or an uncomfortable symptom, I’ll
give it a go. As long as it’s nothing that may prove detrimental, I’m generally
willing to try anything once. Nothing ventured – nothing gained, for at this
point, I’ve got nothing to lose and everything to gain.

For the last few
weeks, I have been experiencing most unpleasant, and quite frankly, some very scary
symptoms such as not being able to swallow and laboured breathing. I’m left gasping
for air and my heart palpitating like a runaway train. Unable to swallow, I feel
I’m choking and can’t catch my breath as it becomes shallow. I try not to panic
as this only makes it worse, but logic is thrown out the window in this
frightening scenario. The muscles in my entire torso are painfully tight adding
to the discomfort and making me feel as if I’m being squeezed to death. It’s horrendous, but I can’t even begin to imagine
what it must be like for my darling husbandto watch and hear me gasp as I struggle to breathe.

Unable to breathe
through my nose, my mouth has a tendency to be dry. With painful stiff joints it’s extremely
difficult to turn over in bed or even just alter position a little. While all
this is going on, as if that wasn’t enough, my toes decided to join in the fury
that Parkinson’s bestows on me every night and curl under in the most
excruciating cramp.

A dear friend who
has become well versed on Parkinson’s disease since I was diagnosed nine years
ago, always ready and willing to help, gave me a special memory foam pillow. It
is extremely dense and far heavier than any pillow I have ever had. I thought
I’d give it a go, and was astonished at what a difference it made to a night’s
sleep. Since then I’ve been calling it my “Magic Pillow” for obvious reasons. Anything
that can keep insomnia from hijacking my sleep and hold my head and neck in a comfortable position has
to be magical.